9.27.2016

Autism and Health Care: Excerpts From My Patients 2.0 Presentation

Video description: Red-headed white woman (me) giving a presentation on autism and health care at a professional conference. Periscope video is low resolution and sideways, apologies.

I was honored to be invited to give a presentation on Autism and Health Care at the Patients 2.0 conference this past weekend, as part of the Health 2.0 2016 Conference in Santa Clara. The hosts took a partial Periscope video recording of my presentation, so here 'tis. Please share if you find any part of it helpful.

[Periscope video and audio begin after the introduction, in which I talked about being the parent of a high-support autistic teenager, and the fact that the Thinking Person’s Guide to Autism community includes autistic people as well as parents and professionals, and that we are very informed by autistic perspectives]

[Talk begin mid-sentence]

“…that people can’t access the kind of care that they deserve, and that they need, because of lack of understanding of what it means to be an autistic person in a healthcare environment. So even though I’ll be talking about the autistic experience in general, a lot of these things are relevant to health care.”

“The most important thing to know about autistic people like my son is that they are wired differently. That is what Neurodiversity means. If you’ve seen Steve Silberman’s book NeuroTribes, if you've read that, it’s basically the history of how autistic people have always been here, and it’s just that we are now able to recognize who they are, the diversity of ways in which autism presents in individuals, and that autism is not a necessarily a disease ... I mean it's NOT a disease.

“That is what neurodiversity means. If you talk to some one like Steve Silberman, he likes to say that it means “not all great minds think alike.”

“And so if autism is not a disease, what is it? Well, it’s a disability. And when you have a disability, what you need to function in the world are accommodations. And unfortunately, because autism is often perceived as a disease, or considered something willful on the part of the autistic person themselves, these accommodations are too infrequently given.

“I know this because with my son personally, I have had a lot of difficult experiences with health case, and I know I'm not alone. I'm not sure how much you already know about autism -- but even though there are various schools of thought about autism as “biological disorder” being caused by "leaky gut" issues or all other kinds of pseudoscience, what is actually true about autism is that autistic people, like anyone else with a condition or a disorder, can have a lot of co-occurring health conditions -- those can accompany autism, but they don’t cause autism. Because autism is neurology, autism is the way your brain is wired.

“And that plays into the concept of autistic heterogeneity, and you’ve probably heard the phrase 'if you’ve met one autistic person, you’ve met one autistic person.' And what that does mean is that while there are a number of common autistic traits, that doesn’t mean all autistic people are going to have them. So you have have somebody who is intellectually gifted but non-speaking, and you can have someone who is developmentally [I meant intellectually] disabled but fully conversational. It really depends on the person.

“That’s why things like functioning labels like “low functioning” autistic person or “high functioning” autistic person are not really helpful. In a health care scenario, if someone is considered “high functioning” then people assume, “oh, what’s their problem? Why can’t they deal with this? Because you’re so high functioning, you can have a conversation, obviously you should have no other problems.” That means their disability is actually ignored.

“Then when you say that somebody is “low functioning,” somebody like my son, well, watch out — because if you think that he doesn’t know what’s going on, then he’s basically going to take you for a ride. He’s completely aware of everything that’s going on around him, even thought he’s technically considered non-speaking and he’s technically considered intellectually disabled. He understands everything that’s going on around him, and God forbid you leave a piece of pizza or mention something that’s going to happen later that you don’t want him to know about — that’s on you.

“So, functioning in general, being in the world in general, but also in a health care scenario, we really have to consider the autistic experience. There are a number of traits that are not necessarily common to every autistic person, but are very common for autistic people in general.

“Those are things like sensory processing. What that means is that we have the five senses: hearing, seeing, touch, all of those things are either under responsive or over responsive. So it can be absolutely excruciating for an autistic person to be in a room that has this kind of echoing sound that we have right here — so they might need to have noise-canceling headphones to be able to function. They might be able to see the fluctuation in a fluorescent light in a way that somebody who’s not autistic would not even notice, and it might make it completely impossible for them to function in something like a medical waiting room, or in a medical office. So if you’re trying to have an exam with someone who comes in for some other medical condition, and they can’t even handle being there, then the option is to provide different kinds of lighting, things like that.

“Auditory processing is another issue; a lot of autistic people have processing delays. This is why a lot of autistic people rely on closed captioning when they watch videos, or when they watch movies, because that allows them to process everything visually, as opposed to processing them visually and auditorily at the same time. And this is another reason why a lot of autistic people prefer to communicate visually, prefer to communicate via text; or it’s nice for kids if you have things like visual schedules to help them understand what you are saying.

“Another thing is eye contact. People are always talking about how “we need to teach autistic kids to make eye contact.” Well, that’s not helpful. A lot of autistic people, because of these processing difficulties, can either give you eye contact or they can pay attention — and you need to choose which one you want. Because it’s not necessary to make eye contact even though it is socially desirable; and for a lot of people it’s not necessary to do for someone to know what’s going on.

“Echolalia is another thing, that means scripting, so a lot of time people may talk to you using pre-prepared phrases like movie quotes, or quotes from books — and anyone who’s every had the movie Caddyshack quoted at them knows non-autistic people do this, too. But a lot of time with autistic people this can be a form of functional communication, so they don’t have to think about stringing all the words together — they can just grab their set phrases, use them, they work, everyone’s happy.

“Another item that’s really important is dyspraxia and apraxia, or motor processing. A lot of times when autistic kids and people don’t speak, that doesn’t necessarily mean they don’t understand. What it can mean is there’s an apraxia, a motor control issue that prevents them from being able to speak. And so in those situations you need to make sure they have correct communication supports, so that they understand what's going on, and they can communicate what’s going on with them correctly.

“This is also why things like Applied Behavioral Analysis can be problematic, because -- and I don't know if you already know what that is -- if you have an actual motor control issue, then you’re not going to be able to respond to commands like “touch nose.” You can hear the person say “touch nose, but you can’t do it. And so that's related to motor processing."

[video ends, but I continued to discuss the topics on the slides not featured in the recording]